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I was diagnosed with MCTD in Feb 2021. It started with me feeling like my hands were on fire, specifically joints. Went to the Rheum already diagnosing myself with RA….well, I was wrong about that! MCTD is a confusing disease to explain to anyone, even to your care team. AND I MEAN TEAM. You may have a PCP, Rheum, Pain Mgmt, Opthamologist, Neurologist, Endocrinologist, etc. and explaining it over and over is exhausting on top of the exhaustion you already have. I can only recommend joining Facebook support groups and other platforms where people like us can connect and share our experiences, medication trial/errors, woes, and wins.

I've found this site to be exceptional and shared it with other MCTD warriors : StuffThatWorks. Com

(I can't put a link here bc of the moderator spam filter, but message me, if you'd like, and I can get you a direct link to the MCTD page. )

I am on Instagram as @releasethecackin if you'd like to connect or get more links. Like you, I have scoured the internet for answers and to better educate myself so that I can educate others (including those that went to medical school – not hating, that's the God-honest truth…you will know more about this rare disease than most.) Join a community and share your experience, it may help you and someone else…..I wish you well and much luck!! ♥️

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Replies to "I was diagnosed with MCTD in Feb 2021. It started with me feeling like my hands..."

Welcome, @releasethecackin. I noticed that you wished to post a URL with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post the link for you: Stuff That Works: MTCD https://www.stuffthatworks.health/mctd

Please add Mayo Clinic Connect to your list of platforms that connect MTCD warriors. 🙂

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